Developing a Distributed Research Network and Cooperative to Conduct Comparative Effectiveness and Safety Studies

Timely, secure and reliable access to emerging information about health care utilization, and the relative benefits and risks of a wide array of therapeutics, is central to monitoring safety and effectiveness. Growing availability of routinely collected electronic healthcare information provides new opportunities, but requires a coordinated approach for adequately powered evidence about the harms and benefits of therapies. In practice, information from more than one electronic system is needed to obtain samples of appropriate size. Efficient and secure methods are needed to access and use information from multiple organizations while respecting the regulatory, legal, proprietary, and privacy implications of use and access. Data owners and custodians must be able to maintain confidentiality and control over protected health information, while permitting authorized users to answer essential questions.

 The Distributed Research Network, an open collaboration group consisting of the AHRQ funded DEcIDE Centers at the HMO Research Network and the University of Pennsylvania, the Harvard CDC Center of Excellence Informatics Team, NCPHI Research lab Team and participating health plans, worked in 2008 and 2009 to design and demonstrate a scalable, secure, distributed health information network model, capable of conducting population-based studies of the risks and benefits of therapeutics.

 

 This proof-of-principle project installed PHGrid nodes at clinical partner sites, in conjunction with NCPHI-provided expertise. These nodes were configured for secure file transfer and linked to locally controlled data sets. In the demonstration, a uniform SAS analysis script was executed at multiple sites and results were combined into a single, aggregate result table.

 This presentation describes the lessons learned concerning implementation, policy, query execution, and software development. These experiences benefit PHIN partners looking for a concrete example of how PHGrid approaches can expand their existing informatics capability to allow collaboration with additional partners at the CDC, academic, state, local, and health provider organization levels.